Haven’t been on forum for awhile but check in every so often. Have posted as single older person getting ready for surgery. My return appt w/ dr Gupta in January resulted in delays for my surgery then this virus hits. I have been suffering from chronic pain both from Scoliosis (30 degrees thoracic & 40 Lumbar) + Degenerative disc disease for a long time. When I read about others stories I am amazed at how you survive the pain. I’v never been able to tolerate pain. Presently I have a new type of pain in thoracic area. I am on short acting opioid since last September to do PT but have continued to use because nothing else helps. I have concerns staying on opioid for a long period of time (am well educated about addiction). I can feel my curves lying down on my back. This new pain started a couple of days ago. Given it will probably be 2 yrs for a vaccine to be confirmed for the Coronvirus I will be about 66. I am pretty sure I’ not going into a germ invested hospital until a proven vaccine is confirmed. Does the increase of curvature result in more pain? I don’t know how to handle it. Advice appreciated.
Announcement
Collapse
No announcement yet.
Cause of New Pain?
Collapse
X
-
It seems plausible that more curvature could cause new pain.
I don't blame you for wanting to avoid hospitals right now. I'm wondering if I'm going to go to a doctor's office in the near future and what it would take to get me there. Let alone a dentist, or nail salon, or hair dresser...The nail salon is not frivolous when your toenails are drawing blood because you can't reach them to trim them.
I have no confidence in the fact that politicians are relaxing things. That doesn't mean everything will be just fine. People at risk still need to watch themselves, as you said.Last edited by Tina_R; 05-10-2020, 12:03 PM.
-
Real fast....Here is a list of things I have done, and others have done for scoliosis and scoliosis pain. Highly disorganized.
1) Sleep, lay down
2) Hot shower, Bath Bath with Epsom salt
3) Exercise, Physical therapy, Exercise ball 24" dia, Stretching, Counter rotating rib and lumbar humps with cliff
4) Aspirin
5) Hot water immersion Hot tub, Spa 106 degrees F
6) Chiropractic
7) Osteopathy
8) Ultrasound
9) Electrostim
10) Swimming, Ocean swimming, Scuba diving
11) Having someone walk on back
12) Traction Manual, or Computerized. Vax-D machine
13) Analgesics Topical Tiger balm, Ben gay Etc
14) NSAIDS. Prescription Anti-inflammatories... Celebrex, Diclofenac, Naproxen Etc
15) Yoga, meditation Lomi Lomi Vacations
16) Accupressure, Accupuncture, Accupuncture with electricity, Chinese modalities with and without Chinese training. (I think it means something)
17) Massage Massage immediatly after hot water immersion.
18) Cannabis, CBD
19) Opioids (Oral)
20) Surgery Open, Minimally Invasive, Tethering
21) Hot pads
22) Pneu-back system de-weighting on tredmill
23) Pain shots
24) Vibration Large vibrator on lumbar hump
25) Massage chairs
26) Arch tables
27) Personal stretching machinery
28) Anesthesia, Morphine injections, Dialuid, and Lortab
29) Gabapentin
30) Muscle relaxers Robaxin, Flexiril Etc
31) Ignore pain
32) Pray
33) Ketamine. Anesthesia, and Infusion
34) Write about scoliosis, posting here on NSF Communicating with other scoliosis patients
35) Not thinking about scoliosis
36) Copes Brace Hard braces, soft braces
37) Tempurpedic bed
38) Soft down pillows
39) Travel in RV Soft Captains chairs.
40) Foam for bed. Use Latex foam 2-4 inches thick
41) Eat healthier
42) Drink more water
43) Go to scoliosis meetings
44) Education on scoliosis topics
45) Comedy Benny Hill, Roseanne Roseannadanna, George Carlin Etc
46) Scroth, Magical suit, Power tools, Spinecore
47) 3D printed braces
48) Ice
49) Medrol packs Methylprednisolone
50) Revision surgery
51) Dr Menmuir
52) Arm bike for bear traps. (Pedal with Arms) Emulate with cans of food 1# Forward and backwards
53) Rotational stretches (In chair, or machine) See Dingo's threads
Thats all I can think of for now.
EdLast edited by titaniumed; 05-11-2020, 11:49 AM.49 yr old male, now 63, the new 64...
Pre surgery curves T70,L70
ALIF/PSA T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
Dr Brett Menmuir St Marys Hospital Reno,Nevada
Bending and twisting pics after full fusion
http://www.scoliosis.org/forum/showt...on.&highlight=
My x-rays
http://www.scoliosis.org/forum/attac...2&d=1228779214
http://www.scoliosis.org/forum/attac...3&d=1228779258
Comment
-
Thanks!
Originally posted by titaniumed View PostReal fast....Here is a list of things I have done, and others have done for scoliosis and scoliosis pain. Highly disorganized.
1) Sleep, lay down
2) Hot shower, Bath Bath with Epsom salt
3) Exercise, Physical therapy, Exercise ball 24" dia, Stretching, Counter rotating rib and lumbar humps with cliff
4) Aspirin
5) Hot water immersion Hot tub, Spa 106 degrees F
6) Chiropractic
7) Osteopathy
8) Ultrasound
9) Electrostim
10) Swimming, Ocean swimming, Scuba diving
11) Having someone walk on back
12) Traction Manual, or Computerized. Vax-D machine
13) Analgesics Topical Tiger balm, Ben gay Etc
14) NSAIDS. Prescription Anti-inflammatories... Celebrex, Diclofenac, Naproxen Etc
15) Yoga, meditation Lomi Lomi Vacations
16) Accupressure, Accupuncture, Accupuncture with electricity, Chinese modalities with and without Chinese training. (I think it means something)
17) Massage Massage immediatly after hot water immersion.
18) Cannabis, CBD
19) Opioids (Oral)
20) Surgery Open, Minimally Invasive, Tethering
21) Hot pads
22) Pneu-back system de-weighting on tredmill
23) Pain shots
24) Vibration Large vibrator on lumbar hump
25) Massage chairs
26) Arch tables
27) Personal stretching machinery
28) Anesthesia, Morphine injections, Dialuid, and Lortab
29) Gabapentin
30) Muscle relaxers Robaxin, Flexiril Etc
31) Ignore pain
32) Pray
33) Ketamine. Anesthesia, and Infusion
34) Write about scoliosis, posting here on NSF Communicating with other scoliosis patients
35) Not thinking about scoliosis
36) Copes Brace Hard braces, soft braces
37) Tempurpedic bed
38) Soft down pillows
39) Travel in RV Soft Captains chairs.
40) Foam for bed. Use Latex foam 2-4 inches thick
41) Eat healthier
42) Drink more water
43) Go to scoliosis meetings
44) Education on scoliosis topics
45) Comedy Benny Hill, Roseanne Roseannadanna, George Carlin Etc
46) Scroth, Magical suit, Power tools, Spinecore
47) 3D printed braces
48) Ice
49) Medrol packs Methylprednisolone
50) Revision surgery
51) Dr Menmuir
52) Arm bike for bear traps. (Pedal with Arms) Emulate with cans of food 1# Forward and backwards
53) Rotational stretches (In chair, or machine) See Dingo's threads
Thats all I can think of for now.
Ed
Comment
-
Originally posted by Scared View PostHaven’t been on forum for awhile but check in every so often. Have posted as single older person getting ready for surgery. My return appt w/ dr Gupta in January resulted in delays for my surgery then this virus hits. I have been suffering from chronic pain both from Scoliosis (30 degrees thoracic & 40 Lumbar) + Degenerative disc disease for a long time. When I read about others stories I am amazed at how you survive the pain. I’v never been able to tolerate pain. Presently I have a new type of pain in thoracic area. I am on short acting opioid since last September to do PT but have continued to use because nothing else helps. I have concerns staying on opioid for a long period of time (am well educated about addiction). I can feel my curves lying down on my back. This new pain started a couple of days ago. Given it will probably be 2 yrs for a vaccine to be confirmed for the Coronvirus I will be about 66. I am pretty sure I’ not going into a germ invested hospital until a proven vaccine is confirmed. Does the increase of curvature result in more pain? I don’t know how to handle it. Advice appreciated.
There will always be a virus, bacteria, or something else that goes bump in the dark to haunt us in hospitals. I also probably take the prize for the most "adverse events" that could go wrong after a major surgery....except the big one: "Buying the farm" which I have so far avoided.
I wish you well. There will never be a perfect time, but when your time comes to really need the surgery, you will know it.
SusanAdult Onset Degen Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Sev disc degen T & L stenosis
2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 2 surgeries
2014: Hernia @ ALIF repaired; Emergency screw removal SCI T4,5 sec to PJK
2015: Rev Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone
2018: Removal L4,5 screw
2021: Removal T1 screw & rod
Comment
-
Originally posted by Scared View PostGee Ed you’re like a walking encyclopedia (ha, ha) - seriously thanks for all the info- what would Dr Menmuir offer that other docs don’t? He did your surgery right?
I did just about everything on that list over the last 45 years living with scoliosis. Readers can look through, and say "I did that". Of course I wanted to post before I forget these things. I hope it helps someone. I can elaborate on each and every line on that list if anyone has questions. A lot of it I have posted about here in the past.
Since there are no questions right now, here is a blast from the past. Gilda Radner November 1978 SNL
"Its always something"
https://www.youtube.com/watch?v=9hYGtXIqDa0
Ed49 yr old male, now 63, the new 64...
Pre surgery curves T70,L70
ALIF/PSA T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
Dr Brett Menmuir St Marys Hospital Reno,Nevada
Bending and twisting pics after full fusion
http://www.scoliosis.org/forum/showt...on.&highlight=
My x-rays
http://www.scoliosis.org/forum/attac...2&d=1228779214
http://www.scoliosis.org/forum/attac...3&d=1228779258
Comment
-
It’s the Pain
Originally posted by susancook View PostHi there, Scared, Our lives are somewhat parallel as I also have [had] Adult Degenerative Scoliosis and I had my surgery when I was ???67??? give or take. Our curves are similar. I found that my pain increased with time, but my curve stayed about the same. My kyphosis worsened. I used a lot of ice bags on my back and ate a lot of cold dinners [husband got the warm dinner, but I was in big time pain by the time that I finished stir frying that the ice bag and I convened for 30 minutes while my dinner became cold.] By the time that I finally had surgery, I tried everything else and just felt that I should, "Get 'er done!" I was never scared, probably because I completely trusted my surgeon by that point and I felt that I did not have any other choice.
There will always be a virus, bacteria, or something else that goes bump in the dark to haunt us in hospitals. I also probably take the prize for the most "adverse events" that could go wrong after a major surgery....except the big one: "Buying the farm" which I have so far avoided.
I wish you well. There will never be a perfect time, but when your time comes to really need the surgery, you will know it.
Susan
Comment
-
Are your ducks in a row?
Originally posted by Scared View PostI was ready for surgery it was the dr who held things up (kept emphasizing the risks). Now it’s the virus that’s delaying it. How am I suppose to survive for 2 more years? I did many things Ed suggested but can’t afford to do some of them like see another dr in another state (we are on lock down where I live). I will be doing this alone which has been the usual senecio in my life. But this time it’s something I’m not sure I can do alone. I hate that you have had to go thru all those surgeries. Thank you Susan
I flew to Washington DC from Portland on one of the first flights after 9/11. Was I afraid? Nope. I figured that every possible measure was taken to prevent another hijacking that could be done. The plane was less than 1/10th full.
But, I am not you. The worst case scenario is for anybody to go into a major surgery feeling that your ducks are not in line. [Can't resist telling a joke: "Not only are my ducks not in a row, I don't even know where they are!"] Do you need another opinion for another spine surgeon that does surgery on older persons? [By the way, do you have osteoporosis?]
SusanLast edited by susancook; 05-12-2020, 07:03 PM.Adult Onset Degen Scoliosis @65, 25* T & 36* L w/ 11.2 cm coronal balance; T kyphosis 90*; Sev disc degen T & L stenosis
2013: T3- S1 Fusion w/ ALIF L4-S1/XLIF L2-4, PSF T4-S1 2 surgeries
2014: Hernia @ ALIF repaired; Emergency screw removal SCI T4,5 sec to PJK
2015: Rev Broken Bil T & L rods and no fusion: 2 revision surgeries; hardware P. Acnes infection
2016: Ant/Lat Lumbar diskectomy w/ 4 cages + BMP + harvested bone
2018: Removal L4,5 screw
2021: Removal T1 screw & rod
Comment
-
Originally posted by titaniumed View PostReal fast....Here is a list of things I have done, and others have done for scoliosis and scoliosis pain. Highly disorganized.
1) Sleep, lay down
2) Hot shower, Bath Bath with Epsom salt
3) Exercise, Physical therapy, Exercise ball 24" dia, Stretching, Counter rotating rib and lumbar humps with cliff
4) Aspirin
5) Hot water immersion Hot tub, Spa 106 degrees F
6) Chiropractic
7) Osteopathy
8) Ultrasound
9) Electrostim
10) Swimming, Ocean swimming, Scuba diving
11) Having someone walk on back
12) Traction Manual, or Computerized. Vax-D machine
13) Analgesics Topical Tiger balm, Ben gay Etc
14) NSAIDS. Prescription Anti-inflammatories... Celebrex, Diclofenac, Naproxen Etc
15) Yoga, meditation Lomi Lomi Vacations
16) Accupressure, Accupuncture, Accupuncture with electricity, Chinese modalities with and without Chinese training. (I think it means something)
17) Massage Massage immediatly after hot water immersion.
18) Cannabis, CBD
19) Opioids (Oral)
20) Surgery Open, Minimally Invasive, Tethering
21) Hot pads
22) Pneu-back system de-weighting on tredmill
23) Pain shots
24) Vibration Large vibrator on lumbar hump
25) Massage chairs
26) Arch tables
27) Personal stretching machinery
28) Anesthesia, Morphine injections, Dialuid, and Lortab
29) Gabapentin
30) Muscle relaxers Robaxin, Flexiril Etc
31) Ignore pain
32) Pray
33) Ketamine. Anesthesia, and Infusion
34) Write about scoliosis, posting here on NSF Communicating with other scoliosis patients
35) Not thinking about scoliosis
36) Copes Brace Hard braces, soft braces
37) Tempurpedic bed
38) Soft down pillows
39) Travel in RV Soft Captains chairs.
40) Foam for bed. Use Latex foam 2-4 inches thick
41) Eat healthier
42) Drink more water
43) Go to scoliosis meetings
44) Education on scoliosis topics
45) Comedy Benny Hill, Roseanne Roseannadanna, George Carlin Etc
46) Scroth, Magical suit, Power tools, Spinecore
47) 3D printed braces
48) Ice
49) Medrol packs Methylprednisolone
50) Revision surgery
51) Dr Menmuir
52) Arm bike for bear traps. (Pedal with Arms) Emulate with cans of food 1# Forward and backwards
53) Rotational stretches (In chair, or machine) See Dingo's threads
Thats all I can think of for now.
Ed
Comment
-
Originally posted by Tina_R View PostEd, Have you tried acupressure, -puncture with and without Chinese training? What was it like? My neurologist believes in acupuncture and I think practices it but I have never tried it.
I had an Non-Chinese Osteopath MD who did not train in China who performed acupuncture on me, and that did not work at all. I did a few of those sessions and stopped going. He did do a sacral adjustment on me that removed probably 20 years of pain in one adjustment. It was a leveraged leg rotational movement that the Chiros do not do, so it was worth seeing him. He also used electricity (9volts) on some of the leg needles and it was not pleasant. (Before scoliosis surgery)
Its hard to find the right people and scoliosis patients need to find the right people. I call this the "doctor tour" Been there, done that. Its hard to say if any of these modalities will work for you. They only way to know, is to try. You could have great sucess if you find the right person.
On #15 I mention vacations....which I dont know if thats a great idea since on many of my vacations, I have been in major pain for various reasons. I am not sure if this is a good idea now that I think about it. Good for the mind, bad for pain. Airplane rides and bad beds might have contributed to the pain....
Most of the items on my list involve money. I spent a fortune on scoliosis over the years. $100,000 on massages alone. Scoliosis is expensive, there is no doubt about that.
Ed49 yr old male, now 63, the new 64...
Pre surgery curves T70,L70
ALIF/PSA T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
Dr Brett Menmuir St Marys Hospital Reno,Nevada
Bending and twisting pics after full fusion
http://www.scoliosis.org/forum/showt...on.&highlight=
My x-rays
http://www.scoliosis.org/forum/attac...2&d=1228779214
http://www.scoliosis.org/forum/attac...3&d=1228779258
Comment
-
Originally posted by titaniumed View PostYes. My Chiro had a Chinese acupressure therapist that worked there who worked MIRACLES. She trained in China. I did approx 100 sessions with her back in the day. (Before scoliosis surgery) She was amazing.
Obvious question... If it worked so well, why did you stop?
I tried acupuncture when I first started having back pain. I would get short term relief, but the pain always returned by the next day. I sort of thought it might be wishful thinking, and that my pro-science mind always betrayed my hope that I'd find a miracle.
--LindaNever argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
---------------------------------------------------------------------------------------------------------------------------------------------------
Surgery 2/10/93 A/P fusion T4-L3
Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation
Comment
-
Originally posted by LindaRacine View PostEd...
Obvious question... If it worked so well, why did you stop?
I tried acupuncture when I first started having back pain. I would get short term relief, but the pain always returned by the next day. I sort of thought it might be wishful thinking, and that my pro-science mind always betrayed my hope that I'd find a miracle.
--Linda
I stumbled across Celebrex which kept me going. That was in Jan 2002. That neurogenic pain was quelled 90% with Celebrex....but hard on the stomach, and I put on a bunch of weight with that one. The NSAID usage lasted on and off until Oct 2007 when I submitted to my surgeries. I used Chiro and Accupressure along with Celebrex and Bextra all those years. And a whole bunch of massage!!!! That's an expensive habit. 2-3X week, 2 hour massages after a hot soak. $1500/$2000 per month. The massages would get me out of pain. Enough to drive back home and get to bed.
Since Accupressure and Accupuncture are relatively easy things to try, it might be worth it to try. Depends on the pain threshold, and the wallet. The wallet is the common denominator in all our pain modalities.
When you try all the things on my list and it doesnt work anymore, or last any amount of time, its time for surgery. I cant believe I did that. I needed surgery at age 16. (Or earlier) Scoliosis survival with big curves starting with 50/50 for 33 years takes a lot of trial and error and effort. They also didnt want to operate on me fusing to the pelvis so had to do the alternative rounds.
My testimonial is of course from an "S" patient. I have an S curve. Nicely balanced, no real plumb issues, little sagittal plane problems, but a lot of pain.
Glad to see you posting Linda...hope things are well. This COVID-19 thing is a whirlwind of new unknown material, sort of like dealing with scoliosis with not knowing what is going to happen. Sound familiar? Most of us here have had this happen to us. The uncertainty of our medical circumstances....I suppose there is no room for getting overly excited, we will make it through all of this in time. Again, changes will be made and hope for a vaccine is necessary. President Trump made a statement that there is now and army working on COVID-19, as monumental as the Manhattan Project during WW2. I am very hopeful that more answers will be coming soon so we can get back to business as usual. Recovery rates are increasing so thats good news.
EdLast edited by titaniumed; 05-16-2020, 01:05 AM.49 yr old male, now 63, the new 64...
Pre surgery curves T70,L70
ALIF/PSA T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
Dr Brett Menmuir St Marys Hospital Reno,Nevada
Bending and twisting pics after full fusion
http://www.scoliosis.org/forum/showt...on.&highlight=
My x-rays
http://www.scoliosis.org/forum/attac...2&d=1228779214
http://www.scoliosis.org/forum/attac...3&d=1228779258
Comment
-
Originally posted by titaniumed View PostSince Accupressure and Accupuncture are relatively easy things to try, it might be worth it to try. Depends on the pain threshold, and the wallet. The wallet is the common denominator in all our pain modalities.
Originally posted by titaniumed View PostThis COVID-19 thing is a whirlwind of new unknown material, sort of like dealing with scoliosis with not knowing what is going to happen. Sound familiar? Most of us here have had this happen to us. The uncertainty of our medical circumstances....I suppose there is no room for getting overly excited, we will make it through all of this in time. Again, changes will be made and hope for a vaccine is necessary. President Trump made a statement that there is now and army working on COVID-19, as monumental as the Manhattan Project during WW2. I am very hopeful that more answers will be coming soon so we can get back to business as usual. Recovery rates are increasing so thats good news.
Ed
Comment
-
Tina, As we all know, being in pain is no fun....The amount of pain will dictate what you do about it and for some of us, we will take what we can get in our battles....even if its temporary. Its almost like being hungry and starving and eating anything that comes across the table. Well, almost anything....depends on how hungry you are. The surgeons and doctors usually have great insurance people that work for them. Ask them, and get a referral. Some Insurance plans will sometimes pay for Massages and Chiropractic, PT and so forth. Ask your doctor. There are no guarantees that anything will work for pain on a permanent basis. All we can do is try. Many times in the past all I wanted was a break from pain, even if it was for a few hours so I can get some sleep.
Availability of certain items can run short if people hoard and buy up in a panic state. People like 3M will sell masks to the highest bidder, even if its China....
Its the trade deals. This is a great example on how these deals can end up being a double edged sword.
I eventually found some toilet paper at Walmart. The person working there told me they get shipments every day, and its all sold off by 9AM. Your chances are better by shopping early in the morning. There are also less people which is exactly what I like when shopping....In and out fast. The virus also affects production figures when COVID hits these plants.
I had a friend with a 3D printer print me a Rowan mask. This is what I am using when I venture out. Its not a replacement for an N95 mask. But I do use furnace filter material that is rated for bateria and viruses. I guess it offers some protection. Its probably going to protect others more than it will protect me.
https://engineering.rowan.edu/resear...ask/index.html
Ed49 yr old male, now 63, the new 64...
Pre surgery curves T70,L70
ALIF/PSA T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
Dr Brett Menmuir St Marys Hospital Reno,Nevada
Bending and twisting pics after full fusion
http://www.scoliosis.org/forum/showt...on.&highlight=
My x-rays
http://www.scoliosis.org/forum/attac...2&d=1228779214
http://www.scoliosis.org/forum/attac...3&d=1228779258
Comment
-
Originally posted by susancook View PostScared....surely, your mother gave you another name....I would wonder why your doctor "kept emphasizing the risks". Were you questioning her/him? I saw 2 spine surgeons before my first surgery. Yes, they were were specific about the risks, maybe a little pessimistic [I suppose that surgeons remember the bad outcomes or are haunted by them, than the good ones]. Surgery is always a Risk vs "Possible, hoped for, this is what I want to happen" Great Outcome, Everyone goes into surgery with a pair of rose colored glasses on. Yes, we hear what is said, but somehow we feel immune or special. I thought that my surgery with a smallish curve but loads of messed up vertebrae/discs would to one of the top spine surgeons be "a relatively easy day" . I asked Dr. Hu, "On a scale of 1-10, one being easy and 10 being extremely difficult, what # would you give my surgery?" She said, "8". Kinda blew my socks off. I was thinking that I was a 5-6 or so ;+} .
I flew to Washington DC from Portland on one of the first flights after 9/11. Was I afraid? Nope. I figured that every possible measure was taken to prevent another hijacking that could be done. The plane was less than 1/10th full.
But, I am not you. The worst case scenario is for anybody to go into a major surgery feeling that your ducks are not in line. [Can't resist telling a joke: "Not only are my ducks not in a row, I don't even know where they are!"] Do you need another opinion for another spine surgeon that does surgery on older persons? [By the way, do you have osteoporosis?]
Susan
Comment
Comment